Monthly Archives: April 2008

…according to the somewhat optimistic promise on the button that you may have noticed on the left of my blog, I am now supposedly blogging for autism awareness.

You may also have noticed that I don’t, so far, appear to have been living up to this promise. This is not for lack of trying, but, as usual, for lack of spare time – I have spent the month so far trying to work on this post while feeling that blogging for autism awareness is something I might be able to see my way clear to finding a few minutes to do some time around, oh, say, September. Of 2009. Possibly. But there is currently at least some of April left, so here is my first stab at a Blogging For Autism Awareness post.

If someone with a handy crystal ball had told me, a few months back, that I would be Blogging For Autism Awareness This April, I would probably have been fairly surprised. I do not mean that in the "I never expected to find myself dealing with the world of autism" sense (that, I’d completely expected) – I mean that I would have been surprised at the idea that I’d think blogging for awareness was something to which I could productively contribute. People already are aware of autism – everybody’s heard of it, haven’t they? I wouldn’t have had any particular inspiration as to what I should say to increase this awareness. "Hey, everyone! Did you know that some people are autistic?" doesn’t really seem like a promising beginning to pad out to blog-post length.

After all, everybody knows the important stuff about autism. Right? We’ve all read the newspaper articles and the magazine stories and the heart-wrenching True Life stuff about Our Autism Nightmare or My Child’s Terrible Affliction. So we all know about autism. Don’t we? Helpless, hopeless, a life-destroying disaster that renders a child incapable of enjoying life or doing any of the things normal people do, unaware of what’s going on around him, and, barring miracles, devoid of hope for any sort of future.

In other words, the general public thinks about autism in pretty much the same way as it used to think about physical disability. A few decades ago, that last sentence would have exactly described the kinds of attitudes a child in a wheelchair would have to face. People talked about them as though they weren’t there, assumed they were incapable of learning, working, or contributing usefully to society, and wrung their hands over the tragedy of it all. Disabled people tried to point out that they’d actually vastly prefer it if everybody else shut up with the pity and the stupid assumptions and got on with something useful, like building ramps, but unfortunately nobody really seemed to want to listen. Which, of course, is still the case to a depressing degree. But, in general, society’s attitude towards the physically disabled has improved a hell of a lot over the last several decades. There’s still a long, long way to go. But if you heard someone today describing children in wheelchairs by gushing about what a tragedy it was, how awful it must be for them to have such hopeless lives, and how awful it must be for their families to have to bear such a burden, then you’d probably recognise that they were being both ignorant and offensive.

When it comes to the autistic, however, we think absolutely nothing of talking that way about them. It’s standard phraseology for any story about autism. How often does it ever occur to any of us that we might be just as wrong – and causing just as much offense – as we would be if we talked about other forms of disability in that way?

Over the past few months, I’ve been reading a lot about autism, browsing through weblinks. At first I was just trying to brush up on my knowledge of diagnosis and current treatment approaches, and the stuff I found when I Googled was pretty standard stuff along those lines – DSM criteria, early signs to look for, applied behavioural analysis therapy, biomeds, yadda yadda yadda. And then, gradually, I found more and more links to webpages and essays that challenged a lot of the traditional views about autism and its treatment. Quite a bit of the stuff I was reading was fromautisticpeoplethemselves – the very people that we’ve always thought to be incapable of communicating. They’re voicing their opinions, loud and clear, on just what they think of society’s attitudes. It makes fascinating, thought-provoking, challenging, uncomfortable reading. Turns out we’ve assumed a whole lot of stuff about autistic people that’s wrong.

We’ve assumed that, because autistic people have a hard time speaking and often can’t learn to speak at all, that this must mean that they can’t communicate. In fact, lots of them can learn how to communicate fluently in other ways – just as a deaf or paralysed person might find it easier to use communication tools other than speech, so can autistic people. Many can type far more articulately than they can talk. Others might benefit from using picture card systems.

We’ve assumed that, because autistic people don’t seem to react to their surroundings, this must mean that they’re not aware of them. In fact, it seems the lack of reaction is more likely to be due to lack of processing/reacting skills than to lack of awareness – just as a totally paralysed person can hear everything you say despite not being able to respond to it, so too can even a severely autistic person. (And… you know all those times people talk about what an awful burden it is to have an autistic child or how autism is some kind of terrible living death? Yup. If you’re talking that way in front of an autistic person, or writing that stuff in a newspaper that they can read, or putting it on a television programme where they can see it, then that person is probably listening and understanding. And is probably just as hurt and offended by having their life described in such a way as a non-autistic person would be.)

We’ve assumed that, because a life looks different from ours, it must not be worth living. We’ve assumed that autism is a terrible affliction and that the only hope for people thus afflicted is for us to come up with A Cure, something that will get rid of that awful autism and let the person be just like everybody else. In fact, it seems that most autistic people don’t want that at all. What they want is to have practical help with dealing with the ways their disability impacts on their lives, help that starts from the point of what they actually need rather than from an assumption that the most important thing is for them to look as normal as possible. To be allowed to be different, as long as those differences do not harm others. To have their opinions listened to.

As I read more and more on those subjects, I was amazed and excited and saddened. Amazed by how little I’d really known about autism, after a lifetime of interest in the subject. Excited by all that I was learning. And saddened that these issues aren’t far more widely known about. The growing popularity of computers and the Internet mean that autistic people have more chance than ever before to let people know how they really feel about the way that autism is portrayed in society and about the treatment (in both senses of the word) that autistic people get. But very few people know that these things are even issues. In fact, the impression I’ve been getting is that a lot of people aren’t even interested in hearing more when autistic people try to tell them. People don’t want to listen. But we need to. Otherwise, autistics will continue to be short-changed.

From my husband, as he shepherded Jamie up to bed last night after some after-dinner playing: "We’re a bit late going upstairs. The fish had to get in the camper van and go to Sainsbury’s and look at all the numbers."

The world is a complicated place, especially when you’ve only had three years to learn about it. But Jamie is making headway.

He knows, for example, that, just as you can form words from letters, so you can form numbers from digits. It’s one of the games he likes playing with the numbers puzzle my mother got him, the one with all the digits to be fitted into holes on a board – he’ll work his way through composing the two-digit numbers in order, putting down each pair of digits in turn and declaring what number they make. Thus, on one occasion, he picked up a 2 and an 0. "Now, when we just put this one down," he declared, putting down the 0, "it just says ‘twen’. But when we put this one down, it says ‘twenty’!"

Then, there are the mysteries of plural and singular forms of words. Reading through one of his many ‘My First Word’ books, Jamie arrived at the section on ‘Clothes’ and was puzzled by the picture of the dress (not something a child of mine gets to see a lot of). "What kind of…" He paused, considering correct grammatical construction. "What kind of clo is that?"

But he’s starting to learn more about different emotional states. Barry, trying to get Jamie’s computer to play one of his DVDs, explained the problem to me as he worked – there was some kind of problem with the DVD setup, and the computer wasn’t happy with it. "It’s sad!" Jamie deduced triumphantly, pleased with his newly-acquired comprehension of how such matters work.

First of all – if you haven’t yet responded to the post below this one, please scroll down and leave your comment! And many thanks to those of you who’ve commented so far.

Meanwhile, a further bit of trivia for the Jamie And Katie Show:

As we ate dinner a couple of nights ago, Barry mentioned to Jamie that, some time soon, we might take him to a large toy shop in a neighbouring town, about thirty miles away. Jamie considered this carefully and homed in on the salient point.

"Thirty miles? We shall count to thirty," he declared, and did. "How many miles is Mothercare at?"

Barry estimated it to be thirty-one miles away. Jamie counted to thirty-one accordingly. "So what shop is at thirty-two miles?" he inquired, on a roll now.

We do not, alas, keep track of the exact details of which shops lie on circles of each possible defined radius from our house, so were unable to offer him any very definite answer to this. So Jamie moved on to asking how many miles Nana and Granddad were at and how many miles Granny Constance was at, and counting each of those while running in circles round the table (all this counting was far too exciting for him to sit still for anything as mundane as eating dinner). What really impressed me was that, when Barry told him that Nana and Granddad’s house was 120 miles away, he counted – correctly – by tens to get to that number, instead of trying to count all the way to 120 by ones.

"And where do you live?" he asked me. I spent some time trying to figure out whether he was actually using pronouns correctly for once and did indeed want to find out where I lived or whether he was, as is usual with him, using ‘you’ to refer to himself and wanted to tell me where he lived, before it occurred to me that it was somewhat of a moot point since the answer was, after all, exactly the same either way. I gave him our address (which, incidentally, he knows already, since he read the house number off our wheelie bin and we taught him the road name to go with it).

"And that is at one mile," Jamie concluded. I clarified that, if he was talking about distance from here, then it was actually at zero miles. But I was still impressed that he was grasping the concept.

Totally other thing that I wish to record: Yesterday he offered to help me put the laundry away. I shall store that moment up and treasure it to sustain me through his teenage years.

Anyone care to join me in wishing my mother a very happy birthday? If you want to help make my mother’s birthday as special as she is, please go ahead and add your birthday wishes to the comments. Let’s see how many we can get!

Apologies for the break in service there. Katie’s main developmental goal, for the past few weeks, has been to see how many times she can wake up during the night. Earlier this week she added in the goal of seeing how long she can keep herself awake for at bedtime when she’s meant to be settling. Things do seem to have finally started to improve these past couple of days, but meanwhile, of course, time that I could otherwise have spent trying to squeeze in a quick blog post has instead been spent on trying to catch up on sleep.

Jamie’s latest game, rather endearingly, is to pretend he doesn’t know what’s behind different doors in the house. It goes something like this: He pulls the door to his bedroom or the bathroom closed, runs down to the far end of the hall, saunters back along, stands in front of the closed door, and announces "What’s this? It’s a door! And what’s behind it? Do you think you should open it, Jamie?" I assure him that yes, indeed he should, and he very carefully pushes it open just far enough for him to slip inside. Then his face appears at the crack in the door, wreathed in his usual huge grin, and he informs me as to what room it is. Sometimes he will also inform me of the state of the lighting ("It’s a dark bathroom!"). And, thusly, the ordinary everyday rooms in the house maintain their mystery and excitement. As a bonus, I get regular reassurance that our bathroom and second bedroom are still there and have not, in fact, fallen off into any alternative dimensions. One just never knows these days.

Oh, and he invented a new word – ‘airlight’ – to describe the look of dust motes drifting in the air. I thought that was a rather good term.

Katie, as always, does stuff that is just as adorable in its own way but less amenable to anecdote (smiling, gurgling, grabbing hair). But she did very well at waving a rattle around yesterday, so I feel she should get some points for that.

Katie rolled over! She did! She rolled from her stomach over onto her back!

I know perfectly well that this is a normal age-appropriate stage of her growth and development which bears no relationship whatsoever to future intelligence level, but I still have to say: What a clever girl!

Jamie didn’t actually do anything of particular note yesterday, so here’s a random snippet of cuteness from recent days:

A few evenings back, I was looking for Jamie’s numbers book, which he’d requested as a bedtime story. (He actually has several numbers books, but I did eventually manage to work out which particular one he was asking for despite having some difficulty convincing him that "The one with the numbers one two three four five six seven eight nine TEN in it!" was not quite as helpful in narrowing the field as he seemed to think.) Jamie was helping out with his idea of looking for something, which involved standing on the bed, examining what appeared to be random points in mid-air, and announcing "It’s not over there... and it’s not over there either…" Then a sudden idea struck him. "Oh, dear!" he exclaimed. "We forgot to warn the numbers book that Jamie is looking for it!"

I hadn’t realised my son was considered such a scourge of numbers books even in his own mind, but I do think it very sporting of him to want to give the book a fair chance to get away.

Katie, meanwhile, is getting increasingly good at grabbing things. She’s been able to do this for about a week or two now – for all I know it would have been longer, but her extreme spittiness means I try to keep her upright as much as feasible and therefore she hasn’t been spending much time under her baby gym in recent months, so her opportunities for grabbing have been more limited than they might have been. It has been – literally – a hit-or-miss process, but, with careful concentration and a certain amount of recalibration as the process goes on, she can now do a reasonable job of getting hold of things placed within her reach. (I remember reading about this process years ago – Penelope Leach describes babies of three to four months having to go through a process of constantly measuring the distance between their hand and the object they’re trying to grab and readjusting as they go. Seeing it happen in real life exactly as described is really pretty cool.) On Monday, Barry tried putting a couple of toys in her cot – her caterpillar and a little white teddy bear dressed in bobble hat and scarf that he calls Winter Bear. Since yesterday morning, she’s been successfully grabbing the bear and pulling it towards her for further exploration. She grabbed the caterpillar once, but her preference so far seems to have been for the bear.

I am thrilled with this new development. Not only is it fascinating to see her reach the stage where she can actually do things instead of just looking cute, but it’s also an extremely practical milestone, in that it marks the beginning of her ability to entertain herself.

Last night, as we were eating dinner, Jamie started chanting "Mmmmmm-mmmmm! Mmmmmmmm!" in progressively higher-pitched tones, all the while waving his forefinger in rising circles above his plate as though exhorting the baked beans to join in with him. (There was once an ad for some type of lunch meat, Mattersons or some such, for which the slogan was "Try saying Mattersons without saying Mmmm" – if you remember the "Mmmmm"s they used to sing on the TV ads, you’ll have the general idea of how he sounded.)

"What are you doing, Jamie?" Barry inquired.

Jamie considered this for a second. "I’m saying ‘Mmmmmmm’!" he informed us brightly.

Clever thing that he did today: Decided he wanted to type ‘Mummy and Katie and Jamie’. I spelled ‘Katie’ out for him, and helped him with ‘and’, but he knew how to type the other words himself. He wanted to go on to type ‘Mr Tickle and Mr Happy’ ("And this next one is quite a difficult one" he told me by way of introduction of this request), but I had to go and change Katie and by the time I’d done that he was busy with something else.

And the weekly supermarket trip through Jamie’s eyes: Tonight, as he played with one of his toy cars, he commented "We get into the car and close the doors and then we drive to Sainsbury’s." (Imaginative play! Yes!) I agreed that this was indeed a common sequence of events, and asked him what we did when we got to Sainsbury’s. He considered this carefully. "We go check all the numbers," he told me. Buying food is clearly a secondary purpose of minor enough importance to have slipped his mind.

Katie, meanwhile, is gurgling a lot and grabbing things. (I feel I’m being somewhat uneven in the reporting here, but what can I say? She’s a baby; she just doesn’t do that much. I’m planning a longer post on her some time soon, if that’s any help.)

Last night was one of my nights for bathing Jamie (I bath him on Friday and Saturday nights; Barry gives him a shower on the other nights of the week). When the bath is finished and he’s let all the water out (his job), he normally climbs out, balancing precariously on the edge of the bath for a second before launching himself into my arms with one of his heart-stopping toothy grins. Last night some water had been splashed on the edge of the bath, and he had a bit of trouble getting purchase to climb up. "It seems," he announced thoughtfully to himself, "that you are too slippery to climb out."

As I type this, he’s playing his DVDs on the computer behind me. His game for tonight has been to open up Word and type the title of each DVD before playing it, copying them carefully letter by letter from the title displayed on the box.

Katie (currently asleep in her cot upstairs) finds Jamie fascinating. When the two of them are in the same room I can see her watching him intently. She’s getting a lot of early exposure to nursery rhymes, thanks to his predilection for getting me to sing my way through "Action Songs And Rhymes" in order – I move her arms and legs through some of the actions, and she thinks this is great fun. But when I try turning her around so that we can smile at each other while I’m singing (after all, this is supposed to be great for the bonding), she’s far more interested in turning round to see what Jamie’s up to.